Since its inception in 2010, the Concurrent Care for Children Provision of the Affordable Care Act has enabled seriously ill pediatric patients and their families to access comprehensive, supportive hospice services while simultaneously receiving ongoing treatment-directed therapies. Although this groundbreaking federal legislation has resulted in improvements in care for vulnerable pediatric patients, the implementation of the law has varied from state to state through Medicaid programming. The pediatric professional community is called to consider how Medicaid services can more effectively be delivered by leveraging legislative mandates and collaborative relationships between clinicians, Medicaid administrators, and policy makers. In this article, we examine ways concurrent care has been executed in 3 different states and how key stakeholders in care for children with serious illness advocated to ensure effective implementation of the legislation. The lessons learned in working with state Medicaid programs are applicable to any advocacy issue impacting children and families .
The 2010 Patient Protection and Affordable Care Act (ACA) enacted landmark pediatric end-of-life legislation. Concurrent Care for Children (ACA, section 2302) enables Medicaid and Children’s Health Insurance Program beneficiaries under age 21 to opt for concurrent care: the continuation of life-prolonging therapies while enrolled in hospice care.1 State Medicaid plans pay for both life-prolonging therapies, treatments, and medications related to the child’s terminal illness and hospice services.2 Hospice care is comfort care for individuals with a prognosis of <6 months. For children who have suffered with serious health problems, many for their entire lives, concurrent care allows their families to continue to hope for a cure while simultaneously receiving expert physical and psychosocial support from hospice.
State-level Medicaid implementation of concurrent care has varied significantly, with limited guidance from the Centers for Medicare and Medicaid Services.3 More than a third of state Medicaid offices have not provided any guidance for providers on implementing concurrent care. Notable exceptions include Utah’s guidelines on staffing and Michigan’s guidance on payment for same-day curative services and hospice care.4,5 Many state Medicaid administrators and claims processors are still either unaware of concurrent care or have implemented concurrent care in the absence of input from hospices, pediatric specialists, pediatricians, and families.6 These administrative barriers limit access to high-quality care for children using concurrent care. As a result, key pediatric stakeholder groups of parents, hospices, children’s hospitals, and others have formed at the state level to advocate for change pediatric concurrent care administration.
In this article, we describe 3 advocacy efforts that resulted in changes to Medicaid oversight of concurrent care that directly impacted child health and well-being at the end of life. Each case highlights the unique outcomes that can result when pediatric coalitions and key stakeholder groups connect with state Medicaid offices to improve education, knowledge, and administration of concurrent care. In Louisiana, the pediatric palliative care coalition and adult hospice and palliative association built relationships with key officials in Louisiana Medicaid to advocate for a definition of concurrent care. In Georgia, pediatric stakeholders and a pediatric hospital advocated for payment reform under concurrent care with the Georgia Medicaid office. In Illinois, a pediatric coalition worked with state legislators and the Illinois Medicaid office to advocate for state-level concurrent care policy change. We end by discussing key lessons learned from this advocacy and the future of this work.
Methods and Process
The Gulf States Pediatric Palliative Care Consortium (GSPPCC) formed in January 2019. The GSPPCC consists of interdisciplinary palliative care stakeholders (including caretakers and bereaved parents) with comprehensive representation throughout Louisiana and Mississippi. In March 2019, GSPPCC learned of changes to wording about the pediatric concurrent care hospice benefit in the Louisiana Medicaid Manual. Hospice leaders worried that the new wording could require hospices to be responsible for extraordinarily expenditures related to curative treatments such as chemotherapies, hospitalizations, and durable medical equipment, which could quickly lead to bankruptcy. Ultimately, the new language could decrease pediatric hospice use, and the GSPPCC feared that many children would suffer unnecessarily as a result.
The parent organization of GSPPCC, the Louisiana Mississippi Hospice and Palliative Care Organization, met with the governor's office in the fall of 2019 to discuss concerns about the new language. The governor supported the consortium to rewrite the language to ensure that all children with a 6-month prognosis can have the option for life-prolonging treatments and hospice support. The consortium worked with national organizations and advocates to propose updated language. The Secretary of the Louisiana Department of Health ultimately supported the final language submitted to Medicaid in December 2019. LAC 50:XV.3503 was amended and 4315 was adopted November 4, 2020. The coalition’s next step is to work with the Louisiana Medicaid office to create policy that describes how to practically translate this new language into daily practice.
The Pediatric Advanced Care Team (PACT) at Children’s Healthcare of Atlanta was established in 2011 to provide interdisciplinary palliative care services for children throughout Georgia and bordering states (eg, Tennessee and Alabama). The inpatient-focused team works closely with community-based hospices to ensure that children with serious illness continue to receive high-quality care outside the hospital and through the end of life. PACT works closely with the pediatric taskforce of the Georgia Hospice and Palliative Care Organization (GHPCO) to improve pediatric hospice and palliative care delivery throughout the state.
In a 2012 statewide survey, PACT and GHPCO identified 2 concerns: (1) hospices were uncertain how best to care for pediatric patients and (2) pediatric hospice providers were having difficulty implementing the concurrent care mandate. There was a concern that care was not being delivered effectively and both hospices and those providing disease-directed therapies were being charged for services and reimbursed by Medicaid inappropriately. To address statewide needs, PACT and GHPCO began an annual pediatric hospice and palliative care forum in 2013 that continues yearly. The forum provides a rich environment for networking and education among key stakeholders in pediatric hospice and palliative care. The partners also established a Medicaid task force in 2014, consisting of hospital-based pediatric palliative care providers, hospice clinicians, hospice administrators, and Medicaid administrators. The task force helped created a streamlined process for concurrent care billing and reimbursement within the Georgia Medicaid Office in 2014, entitled DMA 521-A. Taking into consideration the experiences and perspectives of hospices and pediatric subspecialty providers delivering disease-directed treatment, the process was revised again in 2019 to function through a prior authorization. PACT continues to engage with hospices, pediatric subspecialists, and patients and families through the annual forum, strategic identification of hospices throughout the state with experience in caring for pediatric patients and families, and real-time communication with Georgia Medicaid regarding ongoing challenges.
Nearly a decade after implementation of the ACA, pediatric concurrent care remained rare in Illinois. In 2018, the Greater Illinois Pediatric Palliative Care Coalition (GIPPCC), representing hospital systems, hospices, families and support organizations, began a legislative campaign to promote the value of home-based pediatric palliative care as an effective way to improve medical outcomes and quality of life while reducing costs for children with serious illness.
GIPPCC initially engaged with existing groups, such as the Illinois Hospice and Palliative Care Organization and participated in their State Capital Advocacy Days and quarterly billing meetings with Medicaid/Managed Care Organizations. The coalition also formed alliances with the Illinois Association of Medicaid Health Plans, which shares a mutual goal to find a more cost-effective service option for the most seriously ill children in Illinois.
Next, GIPCC members met with state legislators to discuss how policy could be used to improve care. Recognizing the importance of constituency, physicians, hospice providers, policy professionals, and parents were matched with their local legislators in a series of face-to-face meetings. Each GIPPCC member was coached in delivering a clear, concise message: Home-based pediatric palliative services have been shown in multiple studies to keep children out of the hospital, improve the medical management of symptoms, decrease family stress and result in better childhood quality of life while maintaining budget neutrality.7
Stakeholders were invited to testify in the State Senate Human Services Committee and work with legislative staff to draft Senate Bill 1105, the Home-based Pediatric Palliative Care Program.8 More than 100 constituents (including patients and families) and organizations submitted online support for the legislation.
Although SB-1105 unanimously passed through the Senate and was approved by a House committee, the bill did not receive funding. GIPCC leveraged legislative champions to access leaders at Healthcare and Family Services to design a care delivery model that reflects the resources within Illinois, controls cost, and improves the quality of life for seriously ill children. The Director of Medicaid stated support for a state plan amendment and full statewide program. The state-funded program would add home-based pediatric palliative care services as a Medicaid benefit. In January 2020, the Director of Medicaid reported the inclusion of appropriations for Home-based Pediatric Palliative Care Program in the proposed state budget. This collaborative work has resulted in a twofold increase in the number of hospices willing to care for children.
As a result of the advocacy work described above, each state has created an environment that allows ongoing communication, both formally and informally, between health care providers and policy makers. The relationships provide pathways for clinical input on policy and care delivery. The advocacy work has also fostered a network of pediatric providers and allies within each state committed to improving quality of life for children with life-limiting illness and provides a mechanism for ongoing education and collaboration. Building off of the work of Georgia, the National Hospice and Palliative Care Organization has initiated a state-by-state survey to gather data on access to care and to help shape the future of pediatric palliative and hospice care nationally. Each case demonstrated the effectiveness of stakeholder engagement in advocacy work. Louisiana successfully provided clinical input to revise Medicaid guidelines for concurrent care. Georgia developed and subsequently revised a more functional process for concurrent care reimbursement. Illinois gained the support of Medicaid for funding a state plan amendment. Each case resulted in increased access to pediatric palliative and hospice care and, more importantly, improved the quality of care for seriously ill children. Through a collective platform for advocacy and education, the pediatric providers involved have also experienced greater confidence in their ability to communicate with state policy makers and Medicaid officers.
Collectively, the following are lessons learned from the above case experiences:
Start with simple steps. Although advocacy around an issue that impacts a specific population such as pediatric patients with serious illness can seem daunting, often starting with simple steps such as defining a key challenge or issue that deserves attention at the policy level can be helpful. Focusing on a specific challenge can help a coalition identify individuals within local government who may have leverage to assist with the challenge (such as legislative committee members and state Medicaid leaders).
Creating an interdisciplinary platform for open and honest conversations is critical. The team could be composed of a variety of key stakeholders, including parents, social workers, nurses, physicians, chaplains, child life specialists, state leaders, and Medicaid experts. State hospice and palliative care organizations, nonprofit organizations dedicated to the work of children with complex illness, or local American Academy of Pediatrics chapters may be able to identify members with relevant professional expertise or life experience. The varying perspectives of each individual involved will lend to meaningful, action-oriented conversations on key challenges and potential solutions. Once you have identified your advocacy topic, it is helpful for one individual to take leadership in convening the interdisciplinary group regularly until your goal is achieved.
Preemptively meet local and state leaders, administrators, and legislators before having a specific ask or request. Regularly occurring meet and greets with individuals in the position to influence change relevant to your advocacy issue helps to keep them abreast of the landscape on that issue. Plan Advocacy Days with visits to legislator’s’ offices at the state capitol and attend relevant state Advisory Panel meetings.
Be prepared and practice telling the advocacy story. Stories of patient, family, and front-line provider experiences help illuminate practical successes and challenges, which can be more accessible than beginning with policy dialogue.
Use your expertise. Consider your unique skills and perspectives that will inform critical advocacy efforts, and leverage them as you tell the advocacy story.
Perseverance and patience within one’s advocacy approach are vital for long-term success. As noted in the cases above, sustainable change through legislation often takes months to years to actualize.
In looking toward the future and hopeful improvements in the national health care landscape, we remain keenly focused on what it will require to ensure that pediatric patients with serious illness continue to receive the specialized, supportive care they deserve. In Louisiana, the next step is the practical rollout of concurrent care in policy reform. Stakeholders in Georgia are poised for continued advocacy to expand pediatric hospice and palliative care Medicaid programming within the state. In Illinois, advocacy efforts will continue to promote education about concurrent care among patients and families, clinicians, law-makers, and administrators. Ultimately, the variation in how the Concurrent Care for Children Provision is applied from state to state on the basis of differences in Medicaid funding and governance could be addressed by the passage of federal legislation that mandates best practices. It is our belief that as a pediatric community, we possess the skill and power to effect lasting change in the care our patients experience through tangible advocacy efforts such as those outlined in this article. When we see policy directly affect the health and well-being of our most vulnerable members of society, then we have made progress toward the ideal of equity in access for all.
Dr Johnson conceptualized and drafted the initial manuscript and reviewed and revised the manuscript; Dr Morvant and Ms James conceptualized and drafted the initial manuscript and contributed content expertise to revisions; Dr Lindley conceptualized and drafted the initial manuscript, contributed content expertise to revisions, and critically reviewed the manuscript for important intellectual content; and all authors approved the final manuscript as submitted and agree to be accountable for all aspects of the work.
FUNDING: No specific funding support was provided for the work described in this article; authors were supported in their advocacy work in their respective states through their professional roles at their respective institutions.
POTENTIAL CONFLICT OF INTEREST: The authors have no conflicts of interest relative to this article to disclose.
FINACIAL DISCLOSURE: The authors have indicated they have no financial relationships relevant to this article to disclose.